Fontys research impact of long covid on young people

It started with vomiting in the middle of the night. Can happen, thought Tim, a fourth-year student at Fontys ICT. Probably ate something wrong, he thought. 'But I didn't recover. On the contrary, all kinds of symptoms came up, such as extreme fatigue and pain in my stomach.' It turned out to be the beginning of an almost endless quest. 'I was running half marathons. Now I couldn't even walk down the street because I couldn't stand on my legs. My muscles barely worked for weeks. At one point, I had such abdominal pain that I went to the emergency room. There, I was given very strong painkillers and was sent home.'

No registration
Tim is by no means the only young person affected by long covid. Leoni van Dijk, researcher at Fontys Paramedic: 'According to the RIVM, about 3 per cent of young people between 12 and 25 have persistent complaints after covid. This means that young people are as likely to be victims of long covid as adults. Exactly how many young people have long covid we do not know; there is no national registration (yet) because long covid is hardly recognised. We now say that something is long covid if all other possible conditions have been ruled out.'

Consequences in daily life
Van Dijk studied physiotherapy, followed by a master's degree in paediatric physiotherapy. Now she is doing her PhD at Fontys University of Applied Sciences and Tilburg University's Tranzo department on a study of long covid among young adults. 'The idea to dedicate a PhD study to this came from our Board of Directors. They saw what impact long covid had on our students and staff. More and more were dropping out. That was worrying.' In her research, Van Dijk focuses on the impact of long covid on the patient. 'So I'm not doing biomedical research on the disease itself but on the effects of long covid on young people's daily functioning, focusing on physical, social and emotional aspects; think “brain fog”, extreme exhaustion, loneliness and life goals coming under pressure. Possibly my research will lead to the development of different forms of support for young adults with long covid.'

Students help research
Tim Brouwers studies at Fontys ICT and is involved in a research project by Van Dijk's colleague Manon Peeters, who, as co-supervisor, ensures that Leoni's research meets all the requirements set by science. Peeters, as a lecturer in Health Innovations & Technology, is concerned with the application of sensors in healthcare such as “wearables” (smartwatches) that could support long covid patients. Peeters: 'The ICT and Paramedic institutes are working together in this research. Hence Tim joined our research as a student. This way of working is typical of Fontys: students already contribute to research during their studies in the form of learning assignments. In this case, Tim learns a lot about technical processing of sensor data, developing a meaningful app and ethical processing of this data from people with long covid. It cuts both ways.'

Tim has also shared his experiences as a lung covid patient with Van Dijk; she is taking his findings into her PhD research, which was recently extended with a ZonMw grant. Van Dijk: 'That allows us to expand our research team and further investigate data from RIVM. RIVM has a wealth of data; the trick is to distil from it the information that could be relevant to my research. That could provide valuable information, especially about any differences in the effects of lung covid on younger and older people.'

Long covid has turned Tim's life upside down considerably. 'A festival is no longer in the cards for me. Fortunately, I am getting to know my limits better and better and I have managed to adapt my lifestyle. I hardly go out anymore and don't drink alcohol, for instance. That makes me feel better. Things are going much better now; I have already run two half marathons again'.

Van Dijk hopes her research will contribute to people like Tim being better understood. 'Because we still have no idea what long covid is, people with long covid like Tim are currently left to their own devices. There are still people who claim that long covid does not exist and is in the head. In any case, that is not true. We now know that lung covid affects the muscles and disrupts the nervous system. It causes physical symptoms and we need to find out how to treat them. As Fontys University of Applied Sciences, we want to contribute to knowledge and solutions that give young people perspective and that feed our education and research, so that in a few years we will be able to offer people with lung covid appropriate care.'

Are you between 16-30 years old and would you like to contribute to this research, either as a participant, expert by experience or as a (graduate) researcher?
Please contact longcovidonderzoek@fontys.nl